It's no secret that I love all things diabetes. Except having it that is which is no fun whatsoever, by the way. Other than having the odd funny hypo story or day when I get all under my blood sugar levels under 10 (which seems to coincide with a full moon, strangely enough), having diabetes is the biggest challenge I will ever face in my life. Fact. It can be worrying, frustrating, angering, tiring and annoying to say the least. And when you really upset the gods, these happen all at once.
But in recent years I have learnt that if I harness the energy I put into diabetes and channel it the right way I seem to meet fantastic people, I get involved in projects of which I am terrifically proud and I achieve things I wouldn't have thought possible.
This week was one such week. Thanks to an invite from Lesley Jordan from INPUT (the UK's largest patient advocacy service), I was invited up to Westminster to take part in (well, attend more than take part , really) one of the new All Party Parliamentary Groups (APPG) on Improving Patient Access to Medical Technology.
So what do these APPGs do? Well, until yesterday I wasn't sure myself. But with such a distinct and provoking title, I wasn't about to miss this one. After all, I make no secret of being very grateful for being one of the 'lucky' people to benefit from an insulin pump, but also that I find it frustrating that so many others out there are not afforded the same treatment. So with a title promising to make for extremely interesting participation, I gladly accepted Lesley's offer.
After jamming all my work for Tuesday into Monday, I boarded my train and headed for London feeling very excited but also admittedly baffled that I had somehow been invited to such an important event. I met with Lesley at Waterloo, where we had a quick Subway lunch (low carb and blood sugar friendly of course) and made our way to Parliament.
To give you a bit of background on the APPGs, they are a parliamentary group which are set up for any number of reasons and to discuss any range of issues: there is one for diabetes, there is one for climate change, one for dementia, breast cancer and even one for beer (with over 300 MPs in membership, I might add!). The list goes on. In order to set one up you need at least 20 MPs who are willing to be members of the group, which can be both a positive and a negative. The positive is that you can get some real weight behind you (see earlier beer group comment!) and get some big names into the group. The negative (pessimism informs me) is that it would be a mighty fine thing to put your name to, without really having to get deeply involved. But either way, the point of these groups is to discuss an issue, any issue, which deserves appropriate attention and to raise its profile in parliament. It allows those who attend to be better educated on current issues and hopefully in future to bring about change.
OK, that's the groups in a nutshell. Now for the specifics. This APPG appeared to have 21 MPs (including my local Lib Dem MP and Portsmouth City Councillor......) and in attendance were a number of key people professors, NHS Commissioners (the ones making and re-making decisions about your NHS), representatives from NICE (National Institute for Health and Clinical Excellence), INPUT and The Chairman of the Medical Technology Group (MTG), Barbara Harpham. And what was the purpose of the group? Well, exactly what it says on the tin: to discuss reasons to improve access to medical technology. This particular meet was focused specifically on Orthopaedics, with fast-paced and fact-packed talks by Professor Peter Kay (no, not the rotund dude who owned the Phoenix Club and toured the country with his mate Paddy), but the President of the British Orthopaedic Association, Professor Tim Briggs (Medical Director of the Royal National Orthopaedic Hospital) and Ros Meek (Director of ARMA, the Arthritis and Muskuloskeletal Alliance).
Now you may think all that sounds great and all, but what does that have to do with Diabetes? Well, a lot it turns out. I arrived thinking this would be an exercise in experiencing what goes on in these kind of parliamentary meetings because frankly, at times we all [quite rightfully] question exactly what our government is doing. But it turns out that Diabetes isn't the only disease whose battles are plagued by NHS red tape and procedural flaws. The talks given highlighted the way in which the NHS is fast becoming an emergency service, rather than a health service and that often treatment is simply not given until people are suffering and complications have developed far beyond those seen at the point of diagnosis.
Sound familiar?
As the meeting progressed, I found myself grunting and nodding along more and more enthusiastically in agreement with the points being raised and if the words 'orthopaedics', 'knees' and 'hips' weren't being used, could easily have mistaken the discussion for one about diabetes. In fact I got so grunty I could even have been mistaken for an MP myself - having become quite used to giving a long "urhurumum" when I heard a point I agreed with. Funny how being in a parliamentary meeting turned me into a little parliamentary sheep.
So, the crux of the matter. Do you get a pump - proven to minimise diabetic complications, improve quality of life and offer much better glucose control - when you are first diagnosed? No, instead we need to be suffering debilitating hypos or have a raised A1c (a sure-fire path to complications). You have to be DAPHNE trained and prepped up to the eyeballs before you are even considered for a pump. In fact, Barabara Harpham summed it up perfectly when she pointed out (even though the discussion was orthopaedics) that in the United States there is a 35% take up of insulin pumps, in Europe the figure is 20% and in the UK, worryingly enough, this figure is just 3.5%. THREE POINT FIVE PERCENT!
The big message I took away from yesterday's meeting was that in fact the battles faced by diabetics are worryingly similar to those faced by every other sector of the NHS. And with the challenges faced at the moment, what new barriers will be introduced in order to cost-cut and penny-save.
It could be easy to walk away from a day like yesterday filled with hope that in the next 5 years every diabetic (even those currently ruled out type 2s) will have access to a pump. But politics is just that, political. It is hard to know who was present yesterday in order to take this issue forward and work towards creating a National Health Service which doesn't just meet basic needs (which we all know on many occasions it doesn't do), but offers services and provides technology which can not only improve the lives of the public, but also save huge amounts (we are talking billions) of pounds long term. As Prof. Tim Briggs kept re-iterating, it is about finding the right treatment for the right patient at the right time.
Yesterday was fascinating and the optimist in me sees such groups as a real opportunity to impress the importance of offering patients appropriate and life-saving medical technologies at the earliest possible stage, rather than how the system currently does it, at the point of no return. But I also have to remember that there were only 30 people in that room yesterday. The job is ours to take this forward and continue to impress on policy-makers the absolute importance of making the most of medical technology.
My biggest question resulting from yesterdays meeting was "What's next?", because I am all too aware that the seemingly passionate involvement of the people there yesterday could go no further than be shelved until the next meeting if we don't keep pressing this issue. But the fact is even if yesterday's meeting only served to educate one or two of the MPs in attendance that medical technology is key in saving money, improving lives (both medically and emotionally) and in creating a National Health System we can be proud of, then it is already an achievement in itself.
But the reassuring thing for me was to see people like Lesley in her absolute element and making a bee-line for the Chair in order to dive in and get straight to the nitty gritty. It was reassuring to see that medical technology - which is ultimately going to be the saving of us - being discussed with such passion, and it was reassuring to see Type 1, which dare I say is often forgotten or overshadowed in the media by Type 2, being given such worthy attention.
To see who else out there is fighting out corner, click here.
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